Monday, October 29, 2007

For those who haven't visited Quail Gardens in Encinitas I suggest you go sometime next spring. Here is a small slide show I made from a March 2007 visit with my Father and Sister. I used an Olympus E300 digital camera. If you like any of these pix you can click on the pic 3 times to finally get a real big size that can be saved for your desktop or wherever.

Topic News: I should have some news about a transplant schedule this week. Blog News: I added a tool on the side panel where you can be notified by Email whenever there is a new post.Thanx and Best Regards.

Thursday, October 25, 2007

Cathie and I met with my dr. and the xplant nurse yesterday afternoon. This was a consultation visit. Since undergoing several tests 9 days ago I had to wonder if any of the test results would cause a hold up. I'm happy to report that I have no counter indications against a stem cell transplant at this time. My organs are in prime shape to deal and heal. To the right is a electron microscope picture of a typical stem cell.

Viruses not so good to have if transplanting stem cells.I tested negative for a couple viruses that are problematic for transplant recovery. Both viruses are among the 8 variants of the Herpesvirus family. My tests were negative for Herpes 1,2, & 5. Commonly known as Herpes simplex 1 & 2, this virus is estimated to be present in 58% of people. Herpes 5 is commonly called Cytomegalovirus (CMV) and is estimated to be present in 50-80% of people. These viruses are normally dormant and only a nominal nuisance for people with healthy immune systems. Most people do not even know they are carriers. For transplant patients without an immune system, these viruses can 'wake up' and cause big problems. I am *very* fortunate because none of the 41 pints of blood I've been given in the last 20 months were screened for these viruses. I think there *is* a screening for HHV-5 and have asked that my future transfusions, such as the one next week, be 'CMV negative'.

ScheduleA proposed schedule has now been sent to the National Marrow Donor Program. The donor will be setting the schedule. My xplant nurse said she estimates the transplant activites to begin in 3 to 6 weeks.

We are prepared!Please know that my family has had almost 2 years to prepare for the financial and emotional aspects of my illness and the potential transplant. We appreciate all your well wishing and emotional support. For many reasons I wont go into, we are financially prepared for my upcoming transplant and the 3-12 month recovery period... or even any alternate outcomes. I especially appreciate your offers to donate blood for my transfusions. My dr. tells me that it's actually better for me to continue to rely on donations from anonymous donors. There are many reasons that I wont bore you with. If you want to help, please become a blood and stem cell donor. You may save a life!By the way, did you know that my blood type will change to that of the stem cell donor? My hair may grow in as a different color? Wow!

Fire followupApparently there is now a healthy discussion of whether homeowners should be allowed to stay with their home and help stamp out or extinguish embers before they start the house on fire. Today's San Diego Union Tribune's front page had an article about the fact that San Diego's previous fire chief chose to stay with his house and fight the fire with his garden hose. There was also a column in the local section by Logan Jenkins, "Evacuation dissenters: Heroes in disguise?". His article supported my observations on my previous post. He drove through fire areas unfettered, "It's a privilege afforded the press, the practically unlimited access to mandatory evacuation areas that no homeowner, no matter how insistent, can enter." He continues, "If my house were in danger from a wildfire, I'd want to stay and fight for my home."Currently it is a misdemeanor for a resident to stay in a 'mandatory' evacuation area. I guess there will be a knock on my door by the authorities soon...

Tuesday, October 23, 2007

I am going to try to not post unless I have updates to my stem cell transplant. This, so you dont have to read my theories about alien DNA. You might start thinking that my illness causes mental delusions. It does not. A voice in my head is fairly positive about that. If I have any further off-topic remarks, they will only be posted after a sct update.

Appointment TomorrowI have an appointment tomorrow with my dr to discuss recent tests and to sign release forms.

Delusions, Aliens, and Fire Report.We must evacuate as Southern California Burns!According to US News & World Report, this is true, " Southern California Burns". Grandiose headlines aside, from our perspective in North San Diego, the claim seems to be true. The last 2 days has been a real adventure for my family and many others in a 10 mile radius. Our neighborhood was variously given mandatory or voluntary evacuation orders starting Monday morning. One of the 15 or so fires in Southern California is called the "Witch Creek" fire. This is our fire. Satellite images on TV clearly show all these fires North of the US-Mexico border. Just South of the border where they have the exact same fire conditions, they remarkably dont have a problem with 'accidental fires'. Wait. Enough of my stress-induced paranoid schizophrenic pseudo-conspiracy theories insinuating mischief by yet another group of aliens. Deep breath... Oops! That hurts. Cant do that now, smoke in the air.

Yesterday morning, the authorities (via TV news personalities on every station) said there was a mandatory evacuate evacuation for our area. To prepare for the mass evacuation the authorities had wisely closed the major artery out of the area, Interstate 15. One of the only remaining North-South surface streets was the 2 lane blvd bordering our house. I walked back and looked over the fence, and, yep! gridlock. Panicked faces appeared in every windshield. We waited....Around 5pm, the newscasters announced that our area was now under a second 'mandatory' evacuation because of wind changes. We were all packed so we left soon thereafter. Maddie had been getting sick so we multi-tasked during our evac by taking her to Scripps urgent care. Tests indicated strep throat. We picked up a prescription and returned to our house so Maddie could recuperate in her bed watching Family Guy on TV. I'm writing this from the supposed 'hot zone' miles from any fire. Our neighborhood is still under a 'mandatory' evacuation. The neighborhood is still deserted. Outside, the sky is blue, the temperature is in the seventies, there is only the slight smell of smoke. There is no wind. We remain unafraid!

In my opinion, what can So Cal governments do better for the next fire?

Provide a firefighting official to speak directly to the public on TV. Middle-man news anchors mis-spoke constantly about the data they were given. This led to rumors and misunderstandings.

Secure some aircraft that can operate in typical Santa Ana winds. Otherwise, what good is the equipment?

Issue only voluntary evacuations. Watching dozens of reporters standing on the street next to someone's burning house should indicate that it is safe enough for the owner to be given the right to remain and fight for their property.

Houses bordering on chaparral should be required to be built more fireproof than others. Hot embers blowing from the brush fire, when they reach the house simply race up to the eves and into the little air holes. Once inside the roof, it's all over for the structure.

Thursday, October 18, 2007

Recently, scientist have learned how to encode messages into the genomes of multiplying bacteria and then accurately retrieve the message 100 bacteria generations later. The message is automatically replicated when the bacteria reproduce. Here is one article on the research: Data stored in multiplying bacteria

Why did scientist do this? Because data stored in the usual electronic places, like hard drives, CDs, tapes, etc, can eventually be lost or destroyed. Scientist were looking for a different place to store data. They came up with a biological storage solution, DNA.

So, I started thinking... What if this technology was perfected and performed eons ago by intelligent visitors to earth. What if they stored their important messages and data in... the Human genome!

Wouldn't that make each of our bodies a flash drive for some alien race? Will they ever come back to retrieve their data? mmm...

Monday, October 15, 2007

I had 5 tests today to prep for my sct. A purpose of these test is to set baselines for organ functioning that they can compare to future tests. The echo cardiogram was the most interesting. I laid on my side and watched a video of my heart doing its thing. Each of the 2 main valves were busy flopping around without a care in the world. This was happening inside of me? The tech got good readings so the test did not take long. The Pulmonary test was kinda hard. This one is where you are instructed to breath into a tube and exhale according to very specific instructions. I had to repeat this several times cuz I didnt exhale or inhale fast or slow enough. Afterwards I felt quite tired. Now I know what kids mean when they say 'that sucks' or 'that blows'. I found out my lung capacity was 5 liters. Good thing to know, eh? The last test was a blood draw. I think a record was set for number of vials filled. But I'm quite used to it. In 2 days I'll get another draw for the transfusion this Friday. Todays vials are earmarked for a different purpose. All in all, outside of my bone marrow, the rest of my organs are functioning very well. This is one giant point in my favor going into the sct next month. With the test results provided today, the NMDP (marrow.org) will be contacting the donor(s) to line up the donor's schedule. My schedule will be subject to the donor's schedule. I should get a date this week or next.Conditioning DecisionLast Thurs at an appt my doc said that they (the 3 doctors on the transplant team), had decided against a total body irradiation conditioning protocol for me. Apparently, my age is just over making TBI the best conditioning choice. Instead, I will get the full chemo conditioning. Whatever. At this point I'm in the hands of the good doc. I'm beginning to think that the less I try to understand, the better. Conditioning is what they do to you starting 1 week before the actual injection of donor stem cells. The purpose is to make you very sick so you never want to come back to a hospital. A secondary purpose is to eliminate your current stem cells and immune system so that the donated cells will have a place to set up shop. Kinda makes sense. Conditioning is really the part of the sct I'd really like to skip. But then the rest of the procedure would not work. So, gotta do it.

Monday, October 8, 2007

First, the only real news I have regarding the purpose of this blog. I have 5 hours of tests next Monday a Scripps Green. Then Tues I see the dentist to get my teeth taken care of. It's not advisable to have dentists digging around in the mouth giving germs new places to setup shop. The immune system is still trying to reestablish itself for a year after a stem cell transplant. Now is a good time to see Dr. Needle. Speaking of the sharp doctor...Ok. Read on. This will not be your average text-book read on blood transfusions.

Blood Transfusions 101.

This is what I've learned and experienced since Jan 26, 2006 when I was diagnosed with MDS, became transfusion dependent, and consumed 35 bags (17.5 liters) of Red Blood Cells. Pardon any irreverence you may discover below. This is the way I deal. Thanx.

What is transfused blood?In a nutshell, transfused blood is usually packed, leuko-reduced and irradiated. Each 300ml packed is equivalent to 500ml unpacked. What is packed? They take the donors blood and pour it into a big wooden tub and have an Italian family stomp on it wearing nothing but shorts and tank tops. That packs it down a bit. To finish the packing process they run it thru uncle Jed's moonshine 'still' to remove about 40% of the H2O. Finally they stick it in a GE 1000watt microwave oven to 'irradiate' it. The end product is guaranteed to be 151% proof, redder than normal blood and free of common household pests.

DonorsThe pint bags of blood are, of course, donated from kind people. The questions for xfusers like us are, who, when and where? The why, how, and the what are pretty well documented. The answers we seek will remain a closely guarded secret by the industry. Obviously, xfusers having answers to these questions will serve no purpose other than to make us nervous, paranoid, and litigious. We have to trust the medical industry to maintain the integrity and purity of the blood supply. They seem to do a pretty good job at that. So I wont alarm you by passing on idle speculations and rumors about what I've heard about the identity of donors.

Transportation to the Chemo roomThe donated blood is rushed from the local prisons to the processing centers located very close to the facilities. There, the blood is processed as outlined above. After processing, the blood is poured into small plastic bags with a dozen little tubes hanging out the bottom. One of these tubes will eventually lead into your arm. The other little tubes are from the bag's previous escapades with other patients. The bags are stuffed into an old red igloo cooler packed with mystery ice. The cooler is rushed over to your clinic in an old truck very much like the one they use for public transportation at toon-town in Disneyland. The truck shakes up the blood, infusing vast amounts of oxygen; enough to support an small aquarium full of saltwater blow-fish for up to 3 weeks. Doctors say the extra oxygen is good for you.

The Chemo room. (The info from here on is actually from personal experience)Once you arrive at the chemo room, which, if you are lucky, will be in a hospital, but in my case is directly behind the Pfizer plant in a run-down section of SE San Diego, grimacing nurses will direct you to a very old tweed recliner. I'm sure I've seen that recliner under Carroll O'Connor's butt on TV years ago. When you sit down, metal straps appear out of the chair's arms to restrain your arms. Naw! Just kidding about that. The nurses actually use plain old cloth straps. The nurses get to work. They open their red tackle box and pull out special needles made by Gamakatsu, the leading fish hook manufacturer in the world. I think the needles have serrated edges in order to keep them from sliding out during the transfusion. After several minutes of slapping your arm looking for, and eventually producing, bulging veins, a nurse somehow gets one of the large, serrated needles into your arm. I'm not exactly sure how that happens cuz this is where I always black out. When I come to, there is a needle and tube protruding from my arm and it is secured by duct-tape that seems to cover my whole arm. My entire left arm was rendered hairless months ago. The nurses say hair just 'gets in the way' and besides, hair removal with tape works so much faster than shaving. Before they get to the blood, the nurse first insists on transfusing you with some kind of clear liquid, which I believe is cheap Vodka. I dont know this for sure but I feel very woozy once they switch the turn cocks to let the blood start dripping through the plastic tubing. I think the Vodka is also supposed to lessen the impact of you having to slowly watch Charlie Manson's (bless his heart for donating from the prison) blood slowly make its way through 37 feet of clear plastic hose. I understand they have shorter and opaquer hoses handy but they get a kick out of watching patients fidget as they watch the bright red blood make its 10 minute journey through the clear hose into your arm. By the time the blood has reaches the point of no return near the entry point you could swear you see things swimming in it. I suppose the nurses deserve to have their fun.

The TransfusionThe speed of the transfusion depends upon your age and how much the nurses like you. If you are older they slow down the pump so that 'bad things dont suddenly happen'. The nurse takes your pulse and blood pressure frequently just in case, well, that the blood got mixed up somewhere during the packing or labeling process. If you are younger or they just dont like you they will put the pump in turbo mode. This is cool if you want to get out of there fast, which most everyone does. But this is not cool if you are accidentally receiving type B negative blood when you are A positive. If you survive the first 20 minutes or so, when the nurses temporarily leave the room you can press a couple buttons on the pump, speeding it up so you can make your 3pm shrink appointment. The whole process takes around 2 hours per pint, so bring plenty of reading material. What with the Vodka flush, the benedryl and the tylenol they give you up front, time passes pretty quick. Dont be surprised if you fall asleep. To snap you out of your tranquility when the transfusion is over, the nurse will gleefully remove the duct tape wrapped around your arm... very slowly. Then she will yank the fish hook from your arm. Finally, for no apparent reason, she will slap the insertion area on your arm. I've learned to yank my arm away before the slapping begins, and have been none the worse off for it. Your choice.

The AftermathIts probably different for everyone. But you should feel more energetic since the oxygen carrying capacity of your blood has been greatly enhanced by Charlie's kind donation. As the oxygen makes it way into your brain, your brain suddenly wakes up, remembering where you left your wallet, your keys, your dog. Its quite euphoric actually. You feel like you can actually climb that flight of stairs now, and get past '2 across' on the crossword puzzles.

Side EffectsYes, there can be unwelcome side effects. After 35 pints I've only had a slight rash on my wrist and ankle after 1 transfusion. In regards to other side effects, do *NOT* look on the internet for side effects, especially do not look on any Jehovahs Witness web sites! Ok, I'll break it to you easy. The JV is that when you get a blood transfusion you get 'traits' from the donor. So, for example, if the donor was a murderer... you may start thinking very... dark... thoughts. Obviously hogwash. Strangely enough though, I've taken up humming to myself in the last few months. And, my handwriting has gotten a lot better. Mmmmm... Then, these 2 words keep popping into my head lately: "helter skelter". What does it mean?

Saturday, October 6, 2007

Credit must be given to the Greeks who really kick-started modern medicine. US doctors can speak fluent Greek by the time they leave Med school. Out of 4 years of medical school, 3.5 years is spent learning Greek. The remaining semester is spent learning medical concepts and taking various electives like surfing and golf.

It's all Greek. In English the disease would be called it "f***ed up marrow".MDS = 'f***ed up marrow'.

Most people with Myelodysplastic Syndrome will just say they have a bone marrow disease or 'MDS'. If you prefer, you can call it by it's old name of Pre-Leukemia. But remember, MDS leads to Leukemia less than a third of the time. Knock on wood.Stem Cell transplants are generally not advised for people over 60 years old. The age used to be 50. Just recently, better techniques have improved the outcomes for quinquagenarians. I am going to test these new techniques.